Patients Endometriosis

Do people understand endometriosis?

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Unregistered member

25/03/2019 at 16:32

I have endometriosis and I feel like:

1: No one understands what this involves.

2: If they do know, they think it is just slightly painful periods.

I find it very stressful and upsetting to be so misunderstood. Does anyone else experience this? Please help

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slousa

28/03/2019 at 07:54

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slousa

Last activity on 14/05/2025 at 11:24

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Hi Miranda,

Each and every time i hear of another suffering with Endometriosis my heart goes out to them.

I suffered for over 25 years, and its the same with any invisible illness.............the stigma is huge and the doubt from others is more so!!

As a sufferer, I am sure you have read how just the smallest amount of lining attaching itself can cause the most severe discomfort, pain and undescribable side effects that non sufferers could never know! I lived on Tylex pain killers for years, but it wasnt because i was always in such pain...........the main symptom for me was the irritating and uncontrollable, stinging feelings. Unable to leave the bathroom due to this undescribile thing, i either had to sit on the toilet and keep pushing or lay in a bath in an attempt to calm my insides! But the worse thing was when i read to take bicarbonate of soda, whilst drinking gallons of water to which when i couldnt hold any more water in my bladder and for some reason i got some relief???

There is no true understanding, nor is there a cure and that was the hardest thing to digest,

Hugs

Sara

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Szara Louise Coote

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2019-03-28 07:54:35

JosephineO

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28/03/2019 at 10:23

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JosephineO

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@Miranda @slousa Have you both read our latest testimonial about endometriosis? It seems like such a difficult and painful condition.

Read the testimonial here

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Josephine, Community Manager

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2019-03-28 10:23:10

Unregistered member

28/03/2019 at 10:32

@slousa @JosephineO

Thank you for your comment. It really is such a horrible condition, I am constantly constantly taking pain killers too and sometimes, I just lay down for a whole day with my teeth gritted dealing through the waves of pain.

I did read the testimonial and it resounded with me.

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2019-03-28 10:32:03

Lulubeans

22/06/2020 at 15:05

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Lulubeans

Last activity on 08/12/2021 at 16:13

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@Miranda I completely agree, I feel like many DOCTORS are even not educated on it or fully aware of it. It took me years to find a doctor who would truly listen to me and consider it!

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2020-06-22 15:05:35

CJames

10/03/2021 at 11:33

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Last activity on 10/03/2021 at 11:00

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I admit that I hadn't heard of endometriosis until I started doing research to try to help my daughter get a diagnosis. I think there's lacking a lot of care and information in women's health, especially in reproductive health. There should be a more open dialogue about this, apparently it's a very common condition!

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2021-03-10 11:33:56

slousa

11/03/2021 at 13:01

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slousa

Last activity on 14/05/2025 at 11:24

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Starting now

/https://endometriosis-uk.org/civicrm/event/info?id=692&reset=1=692&reset=1

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Szara Louise Coote

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2021-03-11 13:01:37

nikki77

15/04/2024 at 19:19

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I had it for many years but I'm 51 now and I'm going through the menopause and the illness has not been as bad as I'm getting less periods its every other month so its helped me .

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nicola kennedy

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2024-04-15 19:19:42

nikki77

15/04/2024 at 19:29

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A lot of doctors don't know anything or a lot about endometriosis I've been fobbed off many times at the start of getting my diagnosis over 12 years ago, I was told it was bad period pains and go home and take paracetamol! Even a lady doctor told me she would put me on mefiamanic acid pain meds for severe pain due to period pain? I was backwards and forwards to the doctors for years before I was sent to see a specialist and even then it took a few more years before I was diagnosed. They've come a long way since 2011 so hope other girls can get sorted out quickly it is a horrible illness and once it starts you can't stop it and the pain is horrendous the only way I can describe it is like having fizzing in your lower stomach and the pain and your lower back is hurting everything hurts , you can't do anything for yourself while this is happening I used to put myself to bed and at times I've spent 4-5 days in bed in pain

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nicola kennedy

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2024-04-15 19:29:23

nikki77

25/09/2024 at 19:42

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nikki77

Last activity on 13/12/2024 at 07:57

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Some health experts do and some dont at all I had 1 doctor tell me I was suffering from a bad period and go home with a hot water bottle and take paracetamol I felt so angry I wasn't having a painful period I was in so much pain.

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nicola kennedy

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2024-09-25 19:42:32

JackieVR

30/10/2024 at 06:39

JackieVR

Last activity on 11/06/2025 at 12:42

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Hi there, I've been battling endometriosis since being diagnosed in 2007. It's been a long battle. With many various medications and procedures....

Last year my gynae advised a partial hysterectomy after finding that the endometriosis had twisted my fallopian tube and started to adhere to my abdominal wall.

All was good. But the last 3 weeks have been so bad, with conatant severe pain, mainly on the one side, whoch often had me doubled over.... My gp put me on mefenamic acid and buscopan, 2 weeks later still no ease....

Went to a new gynae yesterday only to find out that my endometriosis was past grade 3 before the hysterectomy therefore meaningit had already started infecting neighboring cells. So my abdominal wall, and part of the intestine is now affected. She suggested watching quantity of dairy amd red meat I consume as these aggravate endometriosis. She has also put me on Visanne now to see if that slows down the progression.

She even said, there is no cure, she gets so frustrated seeing woman get to the point of giving up and being done, as they aren't given full info and feedback from other health professionals. She said the key is not to just treat symptom, I.e. pain etc, but to try become the master of the pain. To control the pain. Visaane doesn't cure anything, but it apparently does slow down the growth of the condition by suppressing estrogen. She also suggests exercise like pilates etc which she herself does to help maintain good muscle strength. So I've started her advise and go for follow up in 3 months 🤞 the pain had eased.

Jackie

Do people understand endometriosis? https://www.carenity.co.uk/forum/endometriosis/living-with-endometriosis/do-people-understand-endometriosis-2776 2024-10-30 06:39:24

Do people understand endometriosis?

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